By Emily Williams-Robertshaw
The Epilepsy Foundation of Alabama logs in to host its 50th birthday party via livestream on Jan. 26.
It’s an important date, chosen to represent the statistical prevalence of epilepsy. According to the foundation, 1 in 26 people will develop epilepsy in their lifetimes.
It’s a large portion of the population, said Garland Stansell, who serves as the chapter’s advisory board chairman.
“Most of the people involved on the board as members are either a person with epilepsy themselves or they have a child with epilepsy,” Stansell said. “I’m a little different and I may be the only person on the board who is the child of a person with epilepsy.”
Stansell first became involved with the foundation in 1999, before the Alabama affiliate offices were moved to Mobile. When the foundation moved the offices back to Birmingham in 2018, Stansell was asked to join the re-established chapter as a board member.
He said his effort is in honor of his mother.
She has dealt with epilepsy since she was about 12 years old. At the age of 11, she fell from a tree and suffered a significant head injury, and as puberty set in and her hormone levels began to change, she began experiencing seizures.
“That’s not really unusual for women,” Stansell said. “(Research has found) that the hormones do kind of dictate the severity.”
When his mother began experiencing menopause, the hormonal change led to the dissipation of her epilepsy symptoms.
“I’m happy to say that she hasn’t really had a seizure in probably 18 years or so,” Stansell said, though she does still experience auras, moments where she feels she’s on the verge of having a seizure. “She’s in her late 70s now and has been on medication for most of her life.”
One of Stansell’s first memories was of his mother experiencing a tonic-clonic seizure, also known as a grand mal seizure. It’s a severe form of seizure, characterized by loss of consciousness and convulsions.
“I remember her having the seizure and not really knowing what to do,” he said. “It was in our home bathroom and I wet a washcloth and put her head in my lap and was just wiping her forehead.”
Throughout his mother’s 20s, 30s and 40s, she experienced a range of seizures, from absence seizures – short staring spells – to the more severe tonic-clonic seizures.
“Her seizures were primarily controlled through medications over the years, and what she struggled with most were the side effects and the social stigma, depressions and the limitations of living with epilepsy.”
Even now, Stansell said, his mother deals with the residual effects of the medications and feelings of isolation.
“The things that I have seen in my lifetime are the advances in medication, the advances in treatment, advancements in diet,” Stansell said.
He has seen those advancements through his mother’s treatment as well as his work at Children’s of Alabama, where he is chief communications officer.
“Our epilepsy center sees so many patients, some who are having hundreds of seizures every day. It’s so debilitating, not only for the child but their family as well,” he said. “Now, if they qualify, they can have these robotic surgeries that pinpoint the area in the brain. They are non-invasive, and almost overnight those seizures stop.”
Raising Money and Spreading Knowledge
The foundation helps fund research but also works to break down social stigma through education and to provide patient support.
The foundation’s outreach efforts include seizure first aid training and certification for the public, as well as training for school personnel and school nurses.
There are a lot of misconceptions about what to do to help a person experiencing a seizure.
“You don’t try to restrain the person,” Stansell said. “They’re not going to hurt themselves. You don’t put something in their mouth.”
Education clears up both the misunderstandings and helps eliminate some of the social stigma.
“Unfortunately, as humans, we fear what we don’t understand,” he said. “So many times, people are fearful of somebody who is having a seizure and they feel helpless. As much education as we can get out there, that really helps everyone.”
In addition, the foundation offers a variety of patient and caregiver support activities.
There is a 24/7 helpline, monthly support groups, the Epilepsy Foundation Kids Crew, the Sudep (sudden unexpected death in epilepsy) Institute, summer camp scholarships, information and referral services, and educational conferences for people with epilepsy and caregivers.
“There are programs that help with emergency medications if someone’s prescription runs out and a resource center where people could get help with transportation,” Stansell said.
The foundation also is dedicated to advocating for patients at the state legislative level, lobbying on topics including seizure safe schools. At the federal level, the foundation advocates for needs through the Teens Speak Up program and Public Policy Institute.
At the 50th birthday celebration, many of these accomplishments will be shared along with the Alabama chapter’s history and information on what the foundation is working on now and what is happening at the national level.
“We’ve also got some amazing families who will be highlighted and will be sharing their own stories,” Stansell said.
Registration for the livestream event is at epilepsyalabama.org/50th. While there is no mandatory fee, households are encouraged to donate $126 or more if they are able.
Staples also noted that there are other ways to get involved, including buying the chapter’s new custom license plate.
“When renewing your license plate, people will now have the option to purchase the custom End Epilepsy tag and support the Epilepsy Foundation,” he said. “It costs, like any of the other ones, $50 extra, but $41.25 of that comes back to help Epilepsy Center at Children’s of Alabama and to help education efforts through the Epilepsy Foundation of Alabama.”
For more information, visit epilepsyalabama.org.